As I stare into the roaring fire, I realize at some point it turned dark outside. Yet, when I started my day at 3am, it was dark then too. My other senses then kick in, and I realize how quiet our 100 year old farm house that my father was so proud of was. There is no sound of wheels on the hardwood floors, no murmurs of faint wheelchair motors, and no high-pitched laughing squeals coming from the man in the chair. There are no more “Emmas”, no more I love yous, and no more dumb dad jokes that I secretly loved even though I would roll my eyes.

The hundreds of likes, comments, messages, food gifts, and condolences pour in. It all weighs so heavy, and I return to the empty sound around me.

No one tells you what the dying process is like. No one talks about the agonizing weeks of watching the one you love most become skin and bones, stop eating, stop drinking, and eventually being unresponsive and barely breathing. No one discusses the grief you process while they are still alive, yet barely hanging on. No one discusses the switch from “Please don’t go” to “Please, let go, it is okay to let go. We will be okay”. No one discusses the “I want you back” pain that surges through your entire body when they finally pass. No one discusses the quiet sound of your own mind and your own grief hours after it has happened.

Death is such a touchy, almost sacred subject. We as humans are conditioned to just respond to news with “I’m so sorry for your loss, they are not suffering anymore” followed by check ups with “Are you ok? How are you doing?” and we are so conditioned to respond with a simple “I’m doing fine” or a “Hanging in there”. Why?

Why are we as complex, emotional human beings, so afraid of showing empathy and real emotion to each other in times of deep need? So much tragedy happens in the world around us, as well as in our lives every single day, and yet we are conditioned to move through it quietly and peacefully.

What we experience in life will never be easy, and we all share so much more in common than we realize with this. Losing parents, losing loved ones, failing, succeeding, wishing-all complex emotions that we all experience. By allowing ourselves to feel them, express them, and share them with one another- we can create a profound movement of empathy and compassion surrounding life’s woes.

I encourage you to take a step back this evening, and allow yourself to feel what you need to feel. Embrace it, almost as much as you need to embrace those around you. Love is a complex, difficult, yet beautiful thing. Let us love as we grieve.

// To my fathers readers, I thank you. The community of Wheelchairjunkie and powerchair diaries was something so unbelievably special to my father. Immercing me in a community of empowerment, empathy, and connection was something my father wanted everyone to experience through his community on wheelchairjunkie and through his writings. Many feel his work was a safe haven for the disability community, but in reality, was a haven for himself. Words will never be able to describe the light and love you all have given my father throughout these last 18 years. From the bottom of my heart, thank you wheelchairjunkies.

When my mother died – was it 10 years ago? – I was giving a tour of my company. My sister valiantly sat by her bedside for days. I did not.

My sister called me on my cell phone. I knew what the call was about. I’d expected it based on previous updates from her.

“I’m sorry,” I said, surrounded by people. “Are you okay?”

With that, I went on with the tour – and my life.

My relationship with my mother was long strained by the time of her death. She was a profound alcoholic while I grew up, placing my brother, sister, and me in situations that no children should be in. While in my 20s, I made every attempt to both care for her and get her treatment. By my 30s, I was burnt out, resentful, and bitter. I wanted nothing to do with her, and she, still drinking, seemingly, wanted nothing to do with me. My sister moved her to our town, and although my mother lived five minutes from me, I virtually never saw her unless she was at my sister’s by coincidence when I stopped by.

I now realize that it’s impossible to have empathy while caught up in your own pain. I had no empathy for my mother, and I literally had a lifetime of pain regarding her.

What I also understand now but didn’t comprehend then is that people like my mother typically don’t just go down such a bleak path. There’s a causation. I’ll never know the entire causation of her alcoholism, but the clues were there. She often had vocal night terrors, in which she was being violently raped. My sister and I listened to them, not knowing what to do. We asked our mother about it and she shared that they were blocked out memories, but it was likely her grandfather, a despicable man by all accounts, and possibly other men, which was quite plausible given that her mother was a heroine addict, with presumed “Johns” coming and going from the apartment. Even though I knew all of this, I never possessed the empathy to connect these horrific events to her alcoholic behavior. I was simply caught in my own hurt, then anger.

My wife and I recently went to a liquor store to buy a bottle of wine. I waited in our van. A woman came out carrying a semi-transparent bag. She appeared in her 50s, rutty complexion, with a quivering bottom lip, shakiness, and careful steps. In the bag were two, liter bottles of vodka. I recognized the bottles of vodka and the woman’s demeanor as emblematic of my mother. I shared this with my wife and she shared that the woman also had difficulty working the debit card machine. The image of the woman stuck with me.

The following day, my wife and I were at the medical center. We passed a row of those with cancer. As I rolled passed, “Margaret” was called. That was my mother’s name. Out of the corner of my eye, a woman stood up, having a dark complexion, wearing a bob wig. For a moment, in my mind, it was my mother.
I was initially just spooked by the two experiences. However, then my wife and I were at lunch and on the way out, she went to the restroom. As I waited with my own thoughts, my eyes welled up. We made it to our van before I completely fell apart, as they say.

My wife asked what was going on, and I explained that I was finally grieving the loss of my mother – with a lot of personal regret.

I’ve long said that my parents died from alcoholism. Out of hurt and anger, I believed that. However, while my father absolutely died from alcoholism, my mother ultimately did not. She, in fact, had cancer twice, and at age 59, she died of ovarian cancer. It was an eight-month struggle. And, I was not there.

The subject remains complex and different for everyone. Psychologists say that distancing yourself from an addict is vital, that codependency will destroy you. As an unknowing codependent with my mother growing up and in my 20s, I can tell you that it’s true, which is among the reasons I pulled away. Yet, psychologists don’t have it completely right. Love isn’t, nor should be all, or nothing. There’s a gray area that even applies to addicts like my mom, where, above all else, there are times when empathy trumps all. I followed the traditional psychology script and made my role in her life nothing, and in my mother’s final days, I wasn’t there. I wasn’t there.

They say that with age comes wisdom. In my case, it has also brought shame, regret, and alas, grieving.

I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.

I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?

Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?

Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.

My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.

Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.

I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?

I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.

I’ve had the privilege of visiting Children’s Hospital of Philadelphia, which goes by CHOP, several times recently. What I’ve learned has both strengthed and questioned my faith in mankind.

During my first visit at CHOP, I was struck by the level of graciousness among all employees, from the parking attendants to the doctors. I wondered, how does an organization with thousands of employees maintain such an inspired staff across all positions? What does CHOP’s human resources department know that others don’t?

I thought about this long and hard, as among my roles at my company is to ensure that our employees understand the importance of their work, the importance of serving our customers who rely on our mobility products. Yet, the more I thought about CHOP’s workforce, I couldn’t break the code.

Then I went back. And, informally, I studied every interaction I witnessed while I was there, from my interactions with others to witnessing others interacting. What I realized was that the secret to CHOP’s amazing culture quickly became not just apparent, but I felt it in every fiber of my being: shared humanity.

See, while CHOP is a great resource as among the best pediatric hospitals in the world, no one wants to be there. Children and their families are only there because they’re going through a medical crisis or disability, often a grave condition. As a result, everyone there is going through something, and that fact is known. As an employee, patient, parent, or visitor, you know that reality – it’s unmistakable when you’re there, people are in the midst of life’s most difficult circumstances. Therefore, the culture brings out nothing but kindness, compassion, and empathy toward everyone you encounter and everyone who encounters you.

When you visit CHOP, you’re issued a daily name badge, which includes your photo. Using an inexplicable security technology to me, when you exit the complex, pink bars void your name badge, noting that you’ve left the buildings.
Every time I exit CHOP, to the parking garage, and the pink bars appear across my day name tag, a big part of me wishes that name tag remained valid in the everyday world, where we, too, intrinsically treated each other with nothing but kindness, compassion, and empathy no matter where or who we are.

The way John drove his power chair still amazes me. It was as if he was merely an occupant as the power chair raced around by itself. Maybe it was the way his body jostled as a result of a lack of muscle strength due to quadriplegia? Or, maybe it was the way his curled hand didn’t appear to fully grasp the joystick. Whatever the case, John, in his power chair, flew down Portland’s sidewalks at 6 MPH with a careless whimsy I’ve never seen elsewhere, where one would think, Man, that power chair is going to kill that guy! And, it did toss him out a time or two – no harm done.

I’ve stopped believing in the finality of death, not in the sense of the departed, but for the living. This has come up for me most recently due to being reminded of John’s life and death, as a bio-pic of his life has made headlines. Another part of it is my own age and disability, having to face my own mortality. It’s all causing me to deeply ponder what death really means for the surviving loved ones? What remains of us when we pass?

The answer I’ve realized is, most of us remains, especially in the lives of those we impacted the most. My mother, father, and stepfather remain in my thoughts and dreams years after their deaths – some fond, some difficult. I’ve been inclined lately toward the fond. My wife and I were grocery shopping and she showed me the most perfect nectarine. I don’t recall seeing one since I was a child, my mother often feeding them to me. For a moment, my mother was there. My father and I didn’t speak much over my life, but we did for a span in my 20s, and he’d say the same words whenever I answered his calls: “Hey, what are ya doing?” I inexplicably find myself saying that to my oldest daughter when I call, and catch myself, for a moment flashing back to my father calling me. Every once in a while, I enter our empty kitchen in the morning and imagine my stepfather happily making coffee as among the reasons that I was onboard with buying our farmhouse is that he would have loved it. And, as for my disability contemporaries who’ve passed, I occasionally pull up YouTube or Facebook, and there they are, the same. John is alive, eight years after his passing, singing, playing the harmonica.

When we were children, we were most likely taught the finality of death. When someone died, we were told that they were gone forever, never coming back. Sometimes we were told that bluntly; other times, more softly, that they went to Heaven, watching over us. Yet, as one who’s experienced loss, I now know that what we were taught was wrong. There’s little finality to death for the living. Those passed remain with us, alive in so many ways. This realization, based on my experience, has brought me tremendous comfort, both toward those I’ve had pass and toward those who will one day experience my passing.

If you’ve had others pass in your life, I’m sure that you can relate to this paradox: They’re physically not present, but remain in our lives in so many ways, appearing often, as simply as via a nectarine.

This isn’t to say that grief, loss, and sadness – all debilitating at times – don’t exist. Of course they do. The loss of anyone close in our lives is devastating. Yet, again, so much still exists, not just via memories and remembrances, but in the seemingly tangible – a nectarine. In this way, the physicality of body is gone, but the person always remains with us.

My wife and I saw the trailer for the John Callahan bio-pic. There’s a clip of Joaquin Phoenix, who plays John, driving down the sidewalk in a power chair. My wife noted that every movement appeared exactly as john. And, I thought, It is John.

The way John drove his power chair still amazes me. It was as if he was merely an occupant as the power chair raced around by itself. Maybe it was the way his body jostled as a result of a lack of muscle strength due to quadriplegia? Or, maybe it was the way his curled hand didn’t appear to fully grasp the joystick. Whatever the case, John, in his power chair, flew down Portland’s sidewalks at 6 MPH with a careless whimsy I’ve never seen elsewhere, where one would think, Man, that power chair is going to kill that guy! And, it did toss him out a time or two – no harm done.

I’ve stopped believing in the finality of death, not in the sense of the departed, but for the living. This has come up for me most recently due to being reminded of John’s life and death, as a bio-pic of his life has made headlines. Another part of it is my own age and disability, having to face my own mortality. It’s all causing me to deeply ponder what death really means for the surviving loved ones? What remains of us when we pass?

The answer I’ve realized is, most of us remains, especially in the lives of those we impacted the most. My mother, father, and stepfather remain in my thoughts and dreams years after their deaths – some fond, some difficult. I’ve been inclined lately toward the fond. My wife and I were grocery shopping and she showed me the most perfect nectarine. I don’t recall seeing one since I was a child, my mother often feeding them to me. For a moment, my mother was there. My father and I didn’t speak much over my life, but we did for a span in my 20s, and he’d say the same words whenever I answered his calls: “Hey, what are ya doing?” I inexplicably find myself saying that to my oldest daughter when I call, and catch myself, for a moment flashing back to my father calling me. Every once in a while, I enter our empty kitchen in the morning and imagine my stepfather happily making coffee as among the reasons that I was onboard with buying our farmhouse is that he would have loved it. And, as for my disability contemporaries who’ve passed, I occasionally pull up YouTube or Facebook, and there they are, the same. John is alive, eight years after his passing, singing, playing the harmonica.

When we were children, we were most likely taught the finality of death. When someone died, we were told that they were gone forever, never coming back. Sometimes we were told that bluntly; other times, more softly, that they went to Heaven, watching over us. Yet, as one who’s experienced loss, I now know that what we were taught was wrong. There’s little finality to death for the living. Those passed remain with us, alive in so many ways. This realization, based on my experience, has brought me tremendous comfort, both toward those I’ve had pass and toward those who will one day experience my passing.

If you’ve had others pass in your life, I’m sure that you can relate to this paradox: They’re physically not present, but remain in our lives in so many ways, appearing often, as simply as via a nectarine.

This isn’t to say that grief, loss, and sadness – all debilitating at times – don’t exist. Of course they do. The loss of anyone close in our lives is devastating. Yet, again, so much still exists, not just via memories and remembrances, but in the seemingly tangible – a nectarine. In this way, the physicality of body is gone, but the person always remains with us.

My wife and I saw the trailer for the John Callahan bio-pic. There’s a clip of Joaquin Phoenix, who plays John, driving down the sidewalk in a power chair. My wife noted that every movement appeared exactly as john. And, I thought, It is John.

Annabelle was five when she came into my life. It was among my truest blessings, not just because of my own yearning to continue being a round-the-clock parent since my oldest daughter was finishing high school and going off to college, but because of the beautiful child Annabelle was. She exuded a joy and carefree zest for life that simply isn’t found in most people, even children.

Any time that we marry someone with children, it’s often said to be a “package deal,” but this union was far beyond such simple words. This was the universe bestowing me among the most precious gifts in my life – a wife and a second daughter.
We often hear of “special needs children.” In raising my oldest daughter, Emily, I always took issue with that term because every child has “special needs,” where our role as parents is to identify and meet each of our children’s needs, unique to that child. In raising Emily from birth through now graduate school, I’ve been aware of the many “special needs” she’s had along the way.

Annabelle, likewise has special needs. But, again, like all children, hers are unique. Annabelle has spina bifida and autism. She’s wicked smart and has a sense of humor that has those of us around her laughing most of the time, but she doesn’t have “typical” interpersonal interactions. There’s no I-love-you, which makes her hugging her mother or occasionally holding my hand so powerful within our hearts.

As a parent, my primary role is in working with my wife to ensure that Annabelle has everything she needs, from skilled nursing care, to a special bed, to her own play room that’s everything. Annabelle, her haven.

I didn’t realize how much Annabelle recognized me and my dedication to meeting her needs until one night in our van. Among her favorite items of engagement is her tablet, on which she watches children’s YouTube videos. She was on her tablet in our van while my wife was putting groceries in our house before we were going out again. Suddenly, Annabelle dropped her tablet in such a spot on the van floor that neither of us could seemingly get it. She was buckled in her car seat and my power chair was situated in such a way that when I backed up to get the tablet, it was under my power chair.

Annabelle became more and more upset, to a panicked degree. I realized that if I reclined my seat back, I may be able to grab the tablet. As I did so, it put me in proximity to Annabelle, and she begin patting my shoulder, repeating, “Mark! Mark! Mark!”

This moment was profound because she doesn’t address anyone by name, so her addressing me directly in her moment of desperation was both heartbreaking, as she was so upset, and breathtaking because she was reaching out to me for help.

Fortunately, I scooped up the tablet and handed it to her, crisis ended.

Annabelle’s father will rightfully always be such. However, being acknowledged as her “Mark” in her time of need was among the most heartfelt moments of my life. Indeed, there’s nothing more poignant as a parent than being there to meet our child’s “special need.”